Speak Up about Incontinence!

Jasmine Schmidt Health Guide
  • Incontinence is an interesting condition in that there’s no clear pattern in the way it affects individuals: everyone’s story is different. It can affect men, women and children of all ages and races. Incontinence can come on seemingly out of the blue, or can settle in gradually over many years. In some cases it can be caused by a trauma or injury, and in other cases the cause may never be known. All these different backgrounds and stories can make it difficult to network amongst peers: in fact, it can be difficult just to find true “peers” who are experiencing incontinence similarly to you.

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    Here’s just a small sampling of the people we hear from at HealthCentral and also at the Simon Foundation for Continence: individuals with multiple sclerosis; men with enlarged prostates; men who’ve had their prostates removed; women who’ve had a sling surgery performed; middle-aged women with urge incontinence and/or overactive bladder; men and women left incontinent after surgical complications – often for unrelated surgeries; individuals with neurogenic bladders due to nerve damage in the back; people who experience incontinence as a result of diabetes; new moms who experience leakage after giving birth; and on and on and on.


    It’s easy to see why this is a difficult condition to find common ground on… we’re all so different! However, with an estimated 33 million Americans suffering from urinary incontinence alone (and countless more suffering from fecal incontinence), surely there are others out there sharing many of your specific questions. In fact, ABC’s 20/20 is reporting on Francois Brunelle, a Canadian photographer researching people – random strangers – who bear a striking resemblance to each other. Brunelle is finding sets of strangers, often living in the same town and sometimes working together or circulating among the same group of friends, who bear such a strong resemblance often their closest friends can’t tell the strangers apart. If there are perfect strangers out there who look like each other, there are certainly others out there whose experiences with incontinence are similar to your own.


    If you’ve found this blog, it means that you have some kind of access to the Internet – the Internet is nothing if it doesn’t make the world smaller, and bring it to your doorstep. By networking online you can now find others who you never would have otherwise met. I have an uncle who adopted not one, but two children from China – as a single father. And he was randomly assigned sons, a rare occurrence in China as most of the children available for adoption are girls. You would think these extenuating circumstances would leave him alone in the world, and yet through the magic of the Internet he has found a support group specifically for American single-fathers of two adopted sons from China. Amazing!


    Use the freedom of the Internet to your benefit. Because incontinence affects individuals in so many different situations, and affects them in such different ways, it can be a difficult medical condition to research online. Often your best bet is to find others who are experiencing a similar situation and learn from them. Keep in mind that everyone’s situation is always unique to them, and you will never find every answer you need by copying someone else’s answers, but you might be able to learn about treatments or management options that you didn’t otherwise know existed, or you might learn of a particular coping technique that a clinician without first-hand experience could never tell you about.

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    As always, I can’t stress enough the importance of seeing a physician, but I also can’t over-stress the importance of a support system and with a condition as personal and personalized as incontinence, the Internet can be the perfect place to build that support system. I have a pretty good idea that there are lots of us out there – I know, because I get your emails asking for help and advice. This week I challenge you to take an extra step forward and post that private question on an anonymous message board – you may unknowingly help someone else, and perhaps someone will see your post and share their own similar experience. Speak up, folks!

Published On: March 05, 2007